Tuesday, October 15, 2013

In the dark: Hiding the light

The reason why my diagnosis only came when I was about 17 is because my parents were keeping it a secret. As you can see from 'In The Dark: Finding The Light', it was from a slip up that I found out about Asperger's Syndrome. 

Was it really necessary to hide it from me? Was it necessary to go without a diagnosis? Even if they wanted to hide it from me, I really felt that my life would have been better if I was diagnosed. My teachers would have had less trouble with me too. 

When I was first diagnosed, my mum told me that she didn't want to go through with it because of the label. She didn't want me to have a hard time finding a job or entering schools. Yet, she never thought about the benefits a diagnosis would bring, like a proper explanation for my behaviours and helping the people I interact with understand why I behave the way I do. She was also afraid that I would use the diagnosis as an excuse to get away with things.

I must admit that I was hurt when she said that she was afraid I would use it as an excuse, because I would never use anything to my advantage. I would always consider the circumstances first, based on whether it would be worth a meltdown. 

I spoke to one of my teachers at school about this, and she explained that it is not an excuse anymore, it was a reason. It's not an excuse for my behaviours, but a reason, an explanation. It was like music to my ears to hear her say that because for once in my life, an adult understood my dilemma. 

My parents still continue to hide Autism and it's existence from me. And it is because of this that I do not want them to know how much I actually know about Aspergers and Autism. To them, I still see Aspergers as Asparagus. They do not know the existence of this blog either.

Recently, a new Korean drama came out that had one of mine and my mum's favourite actor's in it. The drama is 'Good Doctor', and the actor we like is acting as an Autistic doctor. My mum and I aren't watching the drama right now, though I may check it out soon. I had asked my mum what the actor's role in the drama was, and she said "disabled doctor". So I asked her, "what kind of disability?" And she just said, "just disabled."

"Just disabled?" I thought. I had thought that maybe he was physically disabled, that's why she didn't really know how to describe it or something. Then, a couple of days later on Twitter, I came across this: 
Is autism such a "sacred" topic that it can't even be mentioned? Why couldn't I just know what that actor is acting as?

The only one time I can remember my mum speaking openly to me about Aspergers was when she was telling me about it. We were watching a documentary about this girl who had Aspergers Syndrome as well who murdered her friend, watched freak videos online and was apparently abused by her father. After the documentary, my mum turned to me and asked, "what do you think about the show?"

So came my reply, "I think it was ok, but it was a bit scary." Then she asked, "did you hear the part where they said she has Aspergers?" So I said yes, and her reply nearly threw me off, "You are like her."

Although I didn't show it, I was shocked. Surely there were better ways to tell me what Aspergers was about than watching a documentary about an Aspie girl who was a murderer and then telling me I was like her!

If my mum was so hell bent on keeping autism and it's existence away from me because of the negative aspects, I don't know why she had to do this to me! Although I know I probably won't be a murderer, the image I had about Aspergers Syndrome was that of a murderer from that day until I had found the Autism community on Twitter! 

The only good thing that came from that incident was that that was the ONE AND ONLY time my mum didn't try to hide autism from me. 

Should Autism be hidden from those who have and potentially have it? What are your views?


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  2. My instinct is to say a very definite “no”. I have only just been diagnosed as aspie myself and think I would have benefitted from knowing earlier (although it is purely by circumstance that I was not diagnosed before, not that anyone was hiding anything from me).

    In saying that, however, I have 2 daughters who both have Autism, and although they are only 6 and 4 respectively, deciding how and when we tell them is already something I am trying to fathom out. I’m not sure there will be a right time. We’ll have to make the time right.
    I do have some sympathy with your position- to have other people know and not tell you because they perceive it is for the best. But holding back because they are worried about the label also denies you the potential support of other in the same situation who can understand and help what you are going through.

    I like your blog. I will come visiting from time to time.

  3. Thanks for reading and commenting! In my opinion, if you feel you should tell them, it's good that IF they know the existence of autism but don't know they have it, they should have positive views of autism, so that when they eventually find out they have it, they wouldn't view it as a bad thing like how I did. It's very important that they don't end up thinking that they're potential murderes like me!

  4. My parents did the same thing - they refused to let me get diagnosed. Then they refused to allow me services after a diagnosis. Then they didn't tell me. My mom likes to drop hints like "you should watch that documentary on Temple Grandin, I think you'll relate to it" and also I had a cat who was very like me, which my mom called her "Asperger's Cat", and in the same breath (usually complaining about how he was picky or too easily startled or something), say "you're just like *kitty*" to me. But she did everything in her power to hide and destroy any sort of "autism" in me... I think this is wrong. Knowing I'm autistic has helped me immensely, not because it is an excuse, but rather, an explanation and a chance to work better with the tools I have.

    1. Sounds like we're in the same situation! Do you feel uncomfortable bringing up the topic of autism with your mum because of the way she treats the topic?

      I never speak to my mum about autism because if she knew how much I am aware of it, she would say things like, "if you know so much, control yourself next time." I didn't want to hear things like that, so I keep my mouth shut about the topic.